#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where pts, care partners & advocates come to learn from each other & discuss topics of interest to empowered pts
Kimberly Amelia @fireflyrn84
@patientchat Is anyone else having problems with #patientchat hashtag not updating for the chat?
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat
Salem Oaks @SalemOaks
Welcome to #patientchat. This is Kevin from Salem Oaks. We are really looking forward to your input and thoughts during today's chat. You can learn more about us at https://t.co/XAdIrXcKCI @H_SalemOaks @JamieRoger8
Patient Chat @patientchat
Excited to have guest @SalemOaks, who is dedicated to empowering patients to shape the future of medicine, co-hosting today’s #patientchat
Patient Empowerment @power4patients
RT @patientchat: Welcome to #patientchat - where pts, care partners & advocates come to learn from each other & discuss topics of interest…
Jamie Roger @JamieRoger8
Can't wait to hear the thought provoking dialogue led by @SalemOaks !!! #patientchat #patientengagement
Becky Brandt RN @bbhomebody
@fireflyrn84 @patientchat Yes! #patientchat
Patient Chat @patientchat
You can find out more about @SalemOaks and their mission here: https://t.co/vkb7Y8y7LT #patientchat
Kevin J. Fowler @gratefull080504
Are we starting #patientchat ? https://t.co/jZF1oxZYwI
Becky Brandt RN @bbhomebody
RT @patientchat: Welcome to #patientchat - where pts, care partners & advocates come to learn from each other & discuss topics of interest…
Alan Brewington @abrewi3010
Yes #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Jamie Roger @JamieRoger8
Jamie here, from @salemoaks Welcome everyone! #patientchat #patientengagement
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Kevin J. Fowler @gratefull080504
@patientchat Are we starting #patientchat ?
Heather McCullen @H_SalemOaks
Hi, Heather from @SalemOaks here. Excited to hear what everyone has to say. #patientchat https://t.co/RneONu7j7a
Salem Oaks @SalemOaks
It is snowing here in Connecticut. What's it like where you are? #patientchat
Your GPS Doc, LLC @yourgpsdoc
Nicole Rochester, physician, former caregiver, patient/caregiver advocate, and Founder/CEO of @yourgpsdoc. Hi everyone! #patientchat https://t.co/KrkH5EXqFB
Patient Chat @patientchat
Today's chat is solely informational & not a substitute for speaking w/ a doc who's familiar w/ your medical needs and history #patientchat
Kimberly Amelia @fireflyrn84
I just switched browsers. Chrome seems to be working okay #patientchat
Geeky Fox @TechKitsune
Hi! I'm geeky fox! I work in healthcare IT! #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Kevin J. Fowler @gratefull080504
I was looking forward to #patientchat but I guess it is not happening
Richard Zhao @richardzhao
Hello from Minneapolis with 20 degree today and very windy. This is Richard. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: You can find out more about @SalemOaks and their mission here: https://t.co/vkb7Y8y7LT #patientchat
Barby Ingle 📣 @BarbyIngle
@patientchat I'm @BarbyIngle, coming to today's #patientchat from Phoenix, AZ. I am the Pres of @powerofpain, Editor-In-Chief of @iPainFoundation, #cheerleaderofHOPE, author on chronic pain topics, and 20+ year thick case file patient.
Jamie Roger @JamieRoger8
@yourgpsdoc Welcome, so glad to have you here for the discussion @salemoaks #patientchat
Kimberly Amelia @fireflyrn84
@angelee828 @patientchat Hey there! #patientchat
Salem Oaks @SalemOaks
@richardzhao Welcome to the party! #patientchat #drugdevelopment #pharma #patienteducation
Annette McKinnon @anetto
Was at #ctocon18 last week. Talking about innovation, ethics. #patientengagement #patientchat
Patient Empowerment @power4patients
@gratefull080504 Hi Kevin, #patientchat is happening. Hope you can join us.
Mary MACK @MaryOCMack
Hello, I am Mary a patient and advocate for the Laminopathies #patientchat
Mighty Casey Quinlan @MightyCasey
Greetings, Earthlings. Casey Q here, #openscience #opendata warrior, #science + #healthliteracy writer, podcast producer. #patientchat
Jamie Roger @JamieRoger8
@gratefull080504 It is happening, trying switching to chrome, someone else was having the same issue. @salemoaks #patientchat
Salem Oaks @SalemOaks
@gratefull080504 Yes it is. Try switching your browser. #patientchat @patientchat
Patient Chat @patientchat
Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Kimberly Amelia @fireflyrn84
I'm Kim, coming from Wisconsin. #raredisease #chronicillness #healthcareexperience advocate. RN turned full time patient. Also blogger. Looking forward to today! #patientchat
Kevin J. Fowler @gratefull080504
#patientchat I am @gratefull080504 President, the Voice of the Patient, #kidneytransplant recipient Will be here for 30 minutes
Jamie Roger @JamieRoger8
@richardzhao So glad to have you for the discussion! @salemoaks #patientchat
Quin Turner @QuinlanTurner
@patientchat Happy Friday! Quin here from Boston, MA (where it's currently snowing? again?) Diagnosed with Crohn's in 1993, Patient Leader for IBDQorus. #patientchat
Becky Brandt RN @bbhomebody
Good morning I'm Becky RN, #raredisease patient, cofounder @Cpnervecenter #patientchat
Alan Brewington @abrewi3010
Alan here. I’m a #rheum #chronicpain #mentalhealth patient storyteller who might lose the use of my hands today due to pain. #patientchat
Kimberly Amelia @fireflyrn84
@BarbyIngle @patientchat @powerofpain @iPainFoundation Hey Barby! #patientchat
Jamie Roger @JamieRoger8
@BarbyIngle @patientchat @powerofpain @iPainFoundation Glad to have you here for the chat today! @salemoaks #patientchat
Your GPS Doc, LLC @yourgpsdoc
@SalemOaks 55 here in Maryland. #patientchat
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Lisa here from Florida. Co-founder @Cpnervecenter Patient & Advocate for #IntractablePain & #PatientPerspective #patientchat
Jamie Roger @JamieRoger8
@fireflyrn84 @angelee828 @patientchat glad to have you here for the chat today! @salemoaks #patientchat
Patient Chat @patientchat
T1: What are some of the barriers of patient involvement in research and development? #patientchat
Annette McKinnon @anetto
@SalemOaks Snowing in Toronto too. The poor snowdrops. #patientchat https://t.co/CZuqHO5wVP
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94
Richard Zhao @richardzhao
@JamieRoger8 @SalemOaks Thanks for the invitation. #patientchat
Kimberly Amelia @fireflyrn84
@bbhomebody @Cpnervecenter Hi Becky! #patientchat
Patient Empowerment @power4patients
@SalemOaks It's cold and snowy here in Boulder, CO #patientchat
Alan Brewington @abrewi3010
@bbhomebody @Cpnervecenter Hey 👋 #patientchat
Kimberly Amelia @fireflyrn84
@abrewi3010 Hey Alan! Good to "see" you! #patientchat
Jamie Roger @JamieRoger8
@MaryOCMack So glad to have you here for the discussion! @salemoaks #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: Good morning I'm Becky RN, #raredisease patient, cofounder @Cpnervecenter #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: What are some of the barriers of patient involvement in research and development? #patientchat
Becky Brandt RN @bbhomebody
@fireflyrn84 @Cpnervecenter Hey Kimmers💗 #patientchat
Jamie Roger @JamieRoger8
@MightyCasey Glad to have you here for the discussion today! @salemoaks #patientchat
Kimberly Amelia @fireflyrn84
@lisadbudzinski Hey you!!! #patientchat
Vera Rulon FAHIMA @vrulon
#patientchat Vera here from New York. Glad to join the chat today!
Salem Oaks @SalemOaks
A1: Just like patients find it hard to find clinical trials, companies find it hard to find patients who are prepared to be more involved. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ZlYDUOaLcH
Geeky Fox @TechKitsune
Q1: Mistakes being made on instructions. Possibly leading to not clear enough data when needed. #patientchat
Jamie Roger @JamieRoger8
@gratefull080504 so glad you got this working, glad to have you here! @salemoaks #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 @Cpnervecenter Hey Alan, 😀I hope your fingers make it through the hour. #patientchat
Beth Morton @beth_morton
Hello everyone! Beth, coming to you from Vermont where it is snowing AGAIN!! #patientchat
Alan Brewington @abrewi3010
@fireflyrn84 Hi, good to see you too! #patientchat
Mary MACK @MaryOCMack
T1 A major barrier is culture. General lack of respect for patients and an unfair expectation of pure altruism. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T1: Lack of trust, especially among minority communities. #patientchat https://t.co/kJcZaG44tq
Heather McCullen @H_SalemOaks
Not bad today in Ann Arbor. Bright and sunny! #patientchat
Angela Cohen @angelee828
Hey all! 👋🏽 Angela here from Wisconsin #patientchat
Salem Oaks @SalemOaks
So you are saying there are barriers going both ways? #patientchat https://t.co/c4l3fTDm2A
Alan Brewington @abrewi3010
@bbhomebody @Cpnervecenter 🙏🙏🙏 #patientchat
Becky Brandt RN @bbhomebody
@BarbyIngle @patientchat @powerofpain @iPainFoundation Hi Barby- Happy Friday🖑 #patientchat
Annette McKinnon @anetto
A1. Feel that pharma companies have own agendas. Patient insights are saved for marketing. #patientchat
Salem Oaks @SalemOaks
Hello, thanks for coming #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uLWwL97gfI
Barby Ingle 📣 @BarbyIngle
T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC
Richard Zhao @richardzhao
A1: for our #PatientSentiment project, it is difficult to find enough committed #volunteers like folks in the #PatientChat group.
Amanda @LAlupusLady
Friday fun’s continues as I multitask thru #patientchat Hugs to all.
Annette McKinnon @anetto
RT @MaryOCMack: T1 A major barrier is culture. General lack of respect for patients and an unfair expectation of pure altruism. #patientch
Kimberly Amelia @fireflyrn84
T1: time constraints, health condition flares, costs and overall effect on the patient—sorry if this sounds goofy, my brain isn’t functioning very good today. #patientchat
Jamie Roger @JamieRoger8
A1: Not believing that they are heard or valued. @salemoaks #patientchat https://t.co/ffBMoN7sNH
Kimberly Amelia @fireflyrn84
@angelee828 We've pretty much been on every chat together! #patientchat
Inspire @teaminspire
Hi all Eric from Inspire here, happy to join #patientchat today!
Alan Brewington @abrewi3010
T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat
Amanda @LAlupusLady
RT @patientchat: T1: What are some of the barriers of patient involvement in research and development? #patientchat
Heather McCullen @H_SalemOaks
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
Salem Oaks @SalemOaks
I agree they have their own agendas. The trick is to influence those agendas. Any ideas? #patientchat https://t.co/cyaPL0lQKM
Kimberly Amelia @fireflyrn84
@beth_morton Hi Beth! Snow here too off and on! #patientchat
Annette McKinnon @anetto
It’s hard for patients to have a say in what gets researched, how the trial iS. cnstructed, even the consent forms. Read a very bad one today. #patientchat
Mighty Casey Quinlan @MightyCasey
This just in from The Sunlight Is Best Disinfectant Desk: @KHNews #datajournalism project on astro-turfing of patient advocacy orgs. Your take, @SalemOaks ? #patientchat
Amanda @LAlupusLady
@patientchat @power4patients A1 many Health I T designers don’t consider the patient during development #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/bCP55yeP94 #patientchat
Kevin Freiert @K_SalemOaks
Spell Check #patientchat https://t.co/5Endhm3hOK
Barby Ingle 📣 @BarbyIngle
Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il
UNE Health IT @UNE_HealthIT
Greetings from Maine #patientchat
Kimberly Amelia @fireflyrn84
Totally agree, it seems that patients are used to make the product look good. It isn’t the pharma reps or execs on the ads, it’s patients or actors #patientchat https://t.co/QBcWjEkyCt
Ken Taylor @KenRayTaylor
T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.co/0GKzVknT99
Salem Oaks @SalemOaks
Welcome. Thanks for the energy! #patientchat https://t.co/eanyVUeDwV
Kevin J. Fowler @gratefull080504
T1: The biggest barrier is paternalism + ego Giving up control is scary for a lot of organizations #patientchat https://t.co/MLVQ7mbgYe
Quin Turner @QuinlanTurner
@patientchat T1: R&D often limits patients' inclusion and only includes them when their data is needed. This leads to patients rarely having any understanding of a study from inception to conclusion yet somehow many of these studies consider themselves "patient-centered". #patientchat
Patient Chat @patientchat
T2: What perceptions do you have about the role of patients in medicine development? #patientchat
Beth Morton @beth_morton
T1: I guess, knowing where/how to start! I'm a trained social scientist/full-time patient who would love to use my knowledge to help inform R&D, but so far, haven't made any inroads. #patientchat
Vera Rulon FAHIMA @vrulon
@BarbyIngle T1: That's true (re: Regulatory, Legal implications) and sometimes internal practices that overly bureaucratic that don't need to be get in the way. #patientchat
Amanda @LAlupusLady
@patientchat @power4patients A1 Patients are people first, and the tech team often forgets that. #patientchat
Becky Brandt RN @bbhomebody
T1 Invitations to join meetings/groups to discuss policies & procedures are still few & far between, but improving. Also, Exceedingly high costs to attend events and pay for travel keep patients like me at home. #patientchat https://t.co/VAALadisqS
Heather McCullen @H_SalemOaks
A1 this seems to be a theme. There doesn’t appear to be a trusting or equal relationship between researchers and patients. #patientchat https://t.co/I1nxOeFKCc
Kimberly Amelia @fireflyrn84
@richardzhao Hi Richard! How is the project coming along? Hope all is well in the Twin Cities. #patientchat
Jamie Roger @JamieRoger8
Yes, if they thought ahead as to what the patient's interests and understanding were, the literacy could be targeted to be more understandable for everyone. @salemoaks #patientchat https://t.co/hCUVIC3pM7
Amanda @LAlupusLady
RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patien
Salem Oaks @SalemOaks
A1: Pharma companies are not used to reaching out to patients for advice. This is a big change and requires senior management will to push it through. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/MHXeV2hc3A
Mighty Casey Quinlan @MightyCasey
T1: extremely tight patient "qualification" criteria. Was just talking to #t1d person today who would love to be in a trial/study, but "newly dx-ed" and tight a1C criteria are barriers in research projects she's been invited to check out. #patientchat
Dr. Dorrie Cooper @sittingpretty61
I'll be at the Empowered #patientchat on Fri 4/6 at 10amPT | 1pmET. Join me! https://t.co/2uiWHhP9nc via @power4patients
Kimberly Amelia @fireflyrn84
@angelee828 That would be pretty awesome! #patientchat
Salem Oaks @SalemOaks
That's interesting, Can you tell me more? #patientchat #drugdevelopment #pharma #patienteducation https://t.co/iLwL6qsAUx
Amanda @LAlupusLady
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
Vera Rulon FAHIMA @vrulon
@LAlupusLady @patientchat @power4patients T1: This is so true. I often heard "we know what they want"!!! #patientchat
Annette McKinnon @anetto
@SalemOaks It’s easier for patients to get involved on Patient Oriented Research #POR than in clinical trials #patientchat
Salem Oaks @SalemOaks
A1: It is very hard for patients to know when to approach a company, which one to approach, and what to offer. Neither academic nor industry R&D are very open to observers. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/grIvYHfG7O
Dr. Dorrie Cooper @sittingpretty61
RT @savvypuppets: We’re going to Philly next week! Come hang out with us and other #savvypatients and cool people. Join us! Getting a human…
Amanda @LAlupusLady
RT @vrulon: @LAlupusLady @patientchat @power4patients T1: This is so true. I often heard "we know what they want"!!! #patientchat
Kimberly Amelia @fireflyrn84
@bbhomebody expenses for travel are huge! #patientchat
Heather McCullen @H_SalemOaks
@anetto Agreed, especially on what gets researched. What other industry doesn’t ask their customers before investing in product development #patientchat
Patient Empowerment @power4patients
T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat
Amanda @LAlupusLady
RT @vrulon: #patientchat Vera here from New York. Glad to join the chat today!
PatientOrator @PatientOrator
@LAlupusLady @patientchat @power4patients T:1 agreeing with @LAlupusLady all the way! Many times IT designers don't have lived experience to incorporate patient perspectives during the development process, hence barriers..... #patientchat
Becky Brandt RN @bbhomebody
RT @power4patients: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @Jac
Amanda @LAlupusLady
RT @PatientOrator: @LAlupusLady @patientchat @power4patients T:1 agreeing with @LAlupusLady all the way! Many times IT designers don't have…
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @Jac
Salem Oaks @SalemOaks
Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uo5X5XyrVj
Amanda @LAlupusLady
RT @patientchat: T2: What perceptions do you have about the role of patients in medicine development? #patientchat
Becky Brandt RN @bbhomebody
@fireflyrn84 Yes! Even with stipends it's alot of out of pocket expense or on credit! #patientchat
Becky Brandt RN @bbhomebody
RT @fireflyrn84: @bbhomebody expenses for travel are huge! #patientchat
Mighty Casey Quinlan @MightyCasey
RT @power4patients: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @Jac
Jamie Roger @JamieRoger8
Don't we all struggle at times with knowing where to start. #patientchat @H_SalemOaks https://t.co/7TRHVS8v9n
Dr. Dorrie Cooper @sittingpretty61
T1. Knowledge of ongoing research pursuits and access to these studies for people with disabiling conditions. Also encouragement from clinicians to influence R and D.#Patientchat
Inspire @teaminspire
RT @bbhomebody: T1 Invitations to join meetings/groups to discuss policies & procedures are still few & far between, but improving. Also, E…
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T1 Invitations to join meetings/groups to discuss policies & procedures are still few & far between, but improving. Also, E…
Salem Oaks @SalemOaks
A1: Most patients are at a disadvantage due to the language of R&D, the massive education of researchers, unfamiliarity with the process, and, in some cases, their day-to-day condition. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ZnKDfXGOl2
Amanda @LAlupusLady
@patientchat A2 as a person living w/ chronic conditions my role is that of patient, caregiver and Health Records Manager... multiple roles to achieve full ROM and a decent QOL. #patientchat
Kimberly Amelia @fireflyrn84
@bbhomebody It is, especially if we're unable to work because of illnesses. Nobody is offering full ride scholarships to anything. #patientchat
Heather McCullen @H_SalemOaks
@QuinlanTurner @patientchat Patients should be included in the entire process, but it seems especially unfair when they aren’t included in the conclusion. They’ve already given their time, it’s crazy to think they might never learn how they contributed. #patientchat
Geeky Fox @TechKitsune
T2: It is necessary. Most of medical has been about trial and error. And for someone who might want to try an alternative they should have the option. Sometimes it has proven to work! Sometimes we find we might need to look and fix. #patientchat
Becky Brandt RN @bbhomebody
@lisadbudzinski @Cpnervecenter Hi honey! Happy Friday🖑💗 #patientchat
Amanda @LAlupusLady
RT @SalemOaks: Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns.…
Heidi Grabenstatter @PatientIntv
T1: Opportunities are not created for patients/care partners to co-design research projects or participate in grant review often enough. Provide more opportunities for the patients and care partners to share what outcomes are important to them. #patientchat https://t.co/S4Ov7gTsC3
Kimberly Amelia @fireflyrn84
@richardzhao Sounds good! Hope things are going well and settling down. #patientchat
Amanda @LAlupusLady
RT @SalemOaks: A1: It is very hard for patients to know when to approach a company, which one to approach, and what to offer. Neither acad…
Patient Empowerment @power4patients
T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat
Barby Ingle 📣 @BarbyIngle
T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK
Jamie Roger @JamieRoger8
RT @SalemOaks: Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns.…
Salem Oaks @SalemOaks
Agree. Just like patients find it hard to find clinical trials, companies find it hard to find patients who are prepared to be more involved. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ofoc8Z8ueo
Ken Taylor @KenRayTaylor
T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx
Quin Turner @QuinlanTurner
@SalemOaks Many studies where pts are the end user (clinical trials, studies, etc) don't actually involve pt input when designed or concluded. Patient data is needed to test hypotheses, outcomes, side effects but that seems to be where it ends. Just needed for data #livestock #patientchat
Vera Rulon FAHIMA @vrulon
@bbhomebody @fireflyrn84 I have seen some improvement (but not nearly enough). When I worked at a pharma co there was a patient member of the bioethics committee w/all travel taken care of. As well, there were beginnings of patient participation on innovation workshops: stipends & travel #patientchat
Jamie Roger @JamieRoger8
RT @H_SalemOaks: @QuinlanTurner @patientchat Patients should be included in the entire process, but it seems especially unfair when they ar…
Becky Brandt RN @bbhomebody
@richardzhao Hi Richard🖑 I hope you're well. We miss working with you! #patientsentiment #patientchat
Salem Oaks @SalemOaks
Just before I left big pharma last year, we were starting to talk seriously about inviting patients to the earliest Research Teams and discussions. This is a big shift. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/cnqYZgNIaC
Angela Cohen @angelee828
@patientchat T1: IMO, there is still some disconnect (development side) in trusting a patient’s knowledge base of research and what is needed at times. research (as a whole) not enough diversity bc still misinfo abt it in and of itself. Need more awareness/trust overall #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the pat…
Patient Chat @patientchat
RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the pat…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.c…
PatientOrator @PatientOrator
Screaming loudly, YES! YES! YES! to be truly patient inclusive and engage #patient perspective researchers must consider factors such as cost and physical limitations. #patientchat https://t.co/4JcXjj8y9v
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Your GPS Doc, LLC @yourgpsdoc
A2: Patients are not included enough, not just in medicine development but in all aspects of research and development. #patientchat https://t.co/D7KCH9p7zL
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/bCP55yeP94 #patientchat
Patient Empowerment @power4patients
@abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat
Alan Brewington @abrewi3010
T2 I think there is still confusion as to patient involvement. Healthcare is starting to bring us in to solve some problems. They don’t bring us in to design to promote positives #patientchat
Kimberly Amelia @fireflyrn84
T2: patients are involved in the clinical trial stages, but never know if placebo or the real deal. Drug development is a complicated process and patients need to be involved at every level. There needs to be an advisory panel with us on it. #patientchat
Heather McCullen @H_SalemOaks
Challenges in #POR would be a great topic for a future #patientchat. @patientchat https://t.co/upm1uHD4dd
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il
Patient Chat @patientchat
T3: What perceptions do you have about the time it takes to develop a new treatment? #patientchat
Lisa Davis Budzinski @lisadbudzinski
@power4patients @JackMAiello Love this article! Our #PatientPerspective is very valuable in every facet of #healthcare. We have a vast amount of knowledge #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @power4patients: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @Jac
Patient Empowerment @power4patients
RT @patientchat: T3: What perceptions do you have about the time it takes to develop a new treatment? #patientchat
Mary MACK @MaryOCMack
T2. Patients are taking the bigger risk #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Dr. Dorrie Cooper @sittingpretty61
A2. My perceptions are positive in that if medical care becomes more decentralized like doc in a box scenario there are tremendous opportunities to facilitate patient involvement and advocacy boards. #Patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.c…
Heidi Grabenstatter @PatientIntv
@SalemOaks This is true of other funding agencies as well. We discuss incentives, but they are different for every individual. I would love to explore how we could better encourage the full spectrum of patients to participate. #patientchat
Salem Oaks @SalemOaks
Given the chance, patients could bring a world of influence based on their expertise in the disease. But individually, they don't have much of a chance of turning the aircraft carrier of pharma. Organization will help make a difference. #patientchat #patienteducation https://t.co/jXQ79thur4
Kimberly Amelia @fireflyrn84
@vrulon @bbhomebody It's good to hear that there is change taking place within some companies. Hopefully it will become an across the board change. #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Angela Cohen @angelee828
@bbhomebody I agree! There are times I want to go to things and can’t afford to. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @PatientIntv: T1: Opportunities are not created for patients/care partners to co-design research projects or participate in grant revie…
Heather McCullen @H_SalemOaks
RT @SalemOaks: A1: Most patients are at a disadvantage due to the language of R&D, the massive education of researchers, unfamiliarity with…
Dr. Kelly Shanahan @stage4kelly
T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design. We know what's important to us in terms of outcomes and side effects. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @power4patients: T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat
Alan Brewington @abrewi3010
RT @power4patients: @abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat
Barby Ingle 📣 @BarbyIngle
T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976
Heather McCullen @H_SalemOaks
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Angela Cohen @angelee828
RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the pat…
Amanda @LAlupusLady
RT @power4patients: @abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat
Amanda @LAlupusLady
RT @vrulon: @bbhomebody @fireflyrn84 I have seen some improvement (but not nearly enough). When I worked at a pharma co there was a patient…
Ken Taylor @KenRayTaylor
T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to come to final stages. #patientchat https://t.co/RUDnBaldpM
Mary MACK @MaryOCMack
T3. It takes a very long time. Perhaps 5 to 10 years? With orphan indications, maybe less time #patientchat
Salem Oaks @SalemOaks
Many companies are looking toward Patient Advisory Panels. Its a start. For more talk to @HealthiVibe #patientchat #patienteducation https://t.co/I8xNt9HeA0
lillian lake @llake
RT @power4patients: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @Jac
Dr. Kelly Shanahan @stage4kelly
@QuinlanTurner @SalemOaks Yet patients are the best judge of which outcomes are important to us in which side effects we'll tolerate. We should be included in every stage of trial design and implementation.#patientchat
Alan Brewington @abrewi3010
@power4patients #healthliteracy & #engagement are the same in that their a continuous learning process #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @stage4kelly: T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design.…
Quin Turner @QuinlanTurner
@patientchat T2: Personally, I think we're the most underutilized resource. We may not all speak in the same medical fluency but our experiences with meds, side effects, symptoms, insurance, care, make us experts. #patientchat
Kimberly Amelia @fireflyrn84
T3: Time for development of new treatments seems like it takes FOREVER! But, knowing the steps that must be taken to even get to clinical trials and then through the #FDA approval process is complicated. Some treatments are fast tracked and more need to be #patientchat
Angela Cohen @angelee828
@BarbyIngle So true. The educated and understanding their disease part is vital! #patientchat
Becky Brandt RN @bbhomebody
T2 Some healthcare workers feel that patients don't know the inside operations, therefore they aren't helpful. This is so old-school. Not only do we have a load of patient experience, many of us have worked in the medical field & other helpful fields like law etc. #patientchat https://t.co/AgAo4HsSOi
Plavi Mittal @PlaviJM
RT @power4patients: T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat
Salem Oaks @SalemOaks
A3: It is too long - but it is not like anyone is just sitting on their hands. It takes so long because there is so much to learn about a molecule before it can be called a medicine. That learning takes work. #patientchat #drugdevelopment #pharma #patienteducation
Your GPS Doc, LLC @yourgpsdoc
A3: It takes a LONG time. Lots of trials and phases... #patientchat https://t.co/p1KKof2aUY
Kimberly Amelia @fireflyrn84
@PatientIntv @SalemOaks Great idea, Heidi! #patientchat
Amanda @LAlupusLady
A3 after the #LupusPFDD have empathy and a timeline for FDA and researchers in developing new treatments. Eons... #patientchat https://t.co/kM7Z7gbuSO
Heather McCullen @H_SalemOaks
@angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”. Patients are smart, some of them have a research background, all of them have lived experience. And their opinions are valid. #patientchat
Alan Brewington @abrewi3010
T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat
Stacey Tinianov @coffeemommy
Working from the library today to focus on some writing deadlines without office distractions. BUT... I just stumbled upon the last half of #patientchat so I just may call this research and go with it.
Becky Brandt RN @bbhomebody
@QuinlanTurner @patientchat AGREED! It's as if we've gone to college for this! #patientchat
Patient Empowerment @power4patients
@abrewi3010 Agree they are both continuous but you can't have meaningful #engagement without first have some level of #healthliteracy #patientchat
Dr. Dorrie Cooper @sittingpretty61
A3. It seems that when there's a concerted effort to beat the clock then the FDA will rush through testing, however for patients who are ill the process is daunting and if you are alone having energy to fight is so important. We need those patient care advocates #Patientchat
Lisa Davis Budzinski @lisadbudzinski
T2 IMHO meds are developed for patients. We are the end users. Why not learn from the patients start to finish. We’ve been living with our conditions 24/7 It could help tremendously in #PrecisionMedicine #patientchat https://t.co/4iLazxjq5I
Inspire @teaminspire
RT @abrewi3010: T2 I think there is still confusion as to patient involvement. Healthcare is starting to bring us in to solve some problems…
Heather McCullen @H_SalemOaks
RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues.…
Becky Brandt RN @bbhomebody
RT @PatientOrator: Screaming loudly, YES! YES! YES! to be truly patient inclusive and engage #patient perspective researchers must consider…
Alan Brewington @abrewi3010
RT @power4patients: @abrewi3010 Agree they are both continuous but you can't have meaningful #engagement without first have some level of #…
Kimberly Amelia @fireflyrn84
Patients must understand their diseases before they can effectively contribute. That isn’t saying that patients are excluded, but the screening process needs to be stringent and potentially education before starting. #patientchat https://t.co/EXqmDmJ6zl
Inspire @teaminspire
RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medicati…
Heather McCullen @H_SalemOaks
RT @LAlupusLady: A3 after the #LupusPFDD have empathy and a timeline for FDA and researchers in developing new treatments. Eons... #patien
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/bCP55yeP94 #patientchat
Salem Oaks @SalemOaks
That's interesting, Can you tell me more? I have been there and QOL is only talked about well into Phase 3...too late. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/yhgNeEFoKX
Jamie Roger @JamieRoger8
@QuinlanTurner @patientchat that right there is why your voice is so important, and getting your story heard. Patients are invaluable when it comes to real life awareness as to what the medications do to you. @salemoaks #patientchat #patientengagement
Vera Rulon FAHIMA @vrulon
@patientchat T3: It takes too long - yet we want anything new to be safe. If the right people are involved (including patients/caregivers) to ensure effectiveness & safety then perhaps we can pare down the time it takes? That & streamline/make transparent the process. #patientchat
Alan Brewington @abrewi3010
@power4patients Good point!!! #patientchat
Jamie Roger @JamieRoger8
RT @QuinlanTurner: @patientchat T2: Personally, I think we're the most underutilized resource. We may not all speak in the same medical flu…
lillian lake @llake
A1 Yes! And who knows better than the one who is having the experience? #patientchat https://t.co/M57V6PaEdx
PatientOrator @PatientOrator
T2: Patients should play the key role in medicine development. First, cost affects who has access to the medicine once its been developed. Second, regulations has to be revised to be pro patient rather than pro #BigPharma Third, be #PatientsIncluded in development #patientchat https://t.co/ifTsSVViWL
Geeky Fox @TechKitsune
T3: I think medicine is sometimes given very little time or too much time spent on regulations that might not be needed to push the button to develop new treatments. #patientchat
lillian lake @llake
RT @patientchat: You're invited! Join the "Are We Missing the Mark with Patient Involvement?" #patientchat w/guest @SalemOaks Fri 4/6 1pmET…
Kimberly Amelia @fireflyrn84
Exactly! There are so many of us with skills and backgrounds that aren’t ever taken into account. Let us utilize those skills and contribute. #patientchat https://t.co/UsoidEvEYr
Patient Chat @patientchat
T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which treatments are being studied? Why? #patientchat
Beth Morton @beth_morton
RT @H_SalemOaks: @angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”…
Your GPS Doc, LLC @yourgpsdoc
@SalemOaks I agree! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which tr…
Marcela Musgrove @marcela
Joining in late from snowy Massachusetts! #patientchat
Kimberly Amelia @fireflyrn84
RT @H_SalemOaks: @angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”…
Jamie Roger @JamieRoger8
RT @lisadbudzinski: T2 IMHO meds are developed for patients. We are the end users. Why not learn from the patients start to finish. We’ve b…
Dr. Kelly Shanahan @stage4kelly
RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues.…
Annette McKinnon @anetto
RT @stage4kelly: @QuinlanTurner @SalemOaks Yet patients are the best judge of which outcomes are important to us in which side effects we'l…
Vera Rulon FAHIMA @vrulon
@abrewi3010 Yes!!! Agree!!! #patientchat
Vera Rulon FAHIMA @vrulon
RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues.…
Salem Oaks @SalemOaks
While the regulators do insist on some process, they are not as big a hurdle as people think. Their job is really hard. Imagine having 400,000 pp land on your desk and having to determine, "Is this really a medicine?" #patientchat #drugdevelopment #pharma #patienteducation https://t.co/YxUEHY0irK
Stacey Tinianov @coffeemommy
THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so important to bring all the stakeholders in from the get go and collaborate on the structure #patientchat #OneSizeFitsNoOne https://t.co/umV2dxKOs5
Dr. Dorrie Cooper @sittingpretty61
Perhaps this is an opportunity to have an informal think tank of patients as well as clinicians discussing the future research and development ideas on future chats. #Patientchat
Dr. Kelly Shanahan @stage4kelly
@coffeemommy Hi Stacey! You and me both: the stumbling upon, not the research😂 #patientchat
lillian lake @llake
@patientchat A3 My impression outcome is more about money (profit & costs), than it is about an appropriate treatment that serves. #patientchat
Kimberly Amelia @fireflyrn84
We will continue to reinforce this concept every time! #Qualityoflife is the number one priority! It has so many implications and is different for everyone. #patientchat https://t.co/y2CGBMVZbL
Heidi Grabenstatter @PatientIntv
RT @coffeemommy: THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so…
Patient Chat @patientchat
#patientchat https://t.co/lHVo8zuau0
Dr. Dorrie Cooper @sittingpretty61
RT @coffeemommy: THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so…
Barby Ingle 📣 @BarbyIngle
T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results of clinical trials r presented in final findings, not just the successes, I want to know how many started study/finished & exclusions involved #patientchat https://t.co/4Y3n1egt75
Dr. Kelly Shanahan @stage4kelly
@power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. Some of the smartest and most effective advocates I know have zero science background, but they are experts in our disease. #patientchat
Kimberly Amelia @fireflyrn84
@PatientIntv @SalemOaks I'd be willing to collaborate with anyone that is willing. The nurse always lives on! #patientchat
Stacey Tinianov @coffeemommy
@stage4kelly And therefore can I get a simultaneous YaY and Boo for free wi-fi and auto connect capabilities #patientchat
Quin Turner @QuinlanTurner
@patientchat T3: It really depends on the type of treatment but assuming it's pharma related the process will always take a few years and will likely fail by phase 4 (see Mongersen). The trial time is understandable given how many pts/scenarios need to be tested to ensure safety #patientchat
Vera Rulon FAHIMA @vrulon
@JamieRoger8 @QuinlanTurner @patientchat @SalemOaks That couldn't be more true. These are the insights that are most important in developing new treatments: #PatientsIncluded #patientchat
lillian lake @llake
@BarbyIngle A2 On the other hand, a person who is new to a disease is apt to not have preconceptions. It would be valuable to track this patient through the entire process & in review see how outlook & response changes or stays the same. #patientchat
kathy kastner @KathyKastner
RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patien
Patient Empowerment @power4patients
RT @stage4kelly: @power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. S…
Lisa Davis Budzinski @lisadbudzinski
“it takes at least 10yrs for a new medicine to journey from initial discovery to the marketplace, with clinical trials alone taking six to seven years” patient can only hope to be in the right decade 😳 #patientchat https://t.co/59BYZ8x0ER
Alan Brewington @abrewi3010
T3 patients want a better quality of life. Scientists want knowledge & development. CEOs want profits. Time means 3 diff things to these groups #patientchat
Ken Taylor @KenRayTaylor
T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX
Dr. Dorrie Cooper @sittingpretty61
@stage4kelly @coffeemommy Your guts and grit rock my world! You bring inspiration to me today! I am so grateful to hear it and read it. #PatientChat
Your GPS Doc, LLC @yourgpsdoc
A4: Both are important. I’m not sure I can prioritize one over the other. #patientchat https://t.co/9g9AK62QsT
Annette McKinnon @anetto
RT @H_SalemOaks: @anetto Agreed, especially on what gets researched. What other industry doesn’t ask their customers before investing in pr…
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@patientchat #patientchat The other posters are right, patients need to be included at all stages from designing to conclusion. Only then can their needs and experiences be heard.
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivate…
Geeky Fox @TechKitsune
T4:That's tough, both have their own right of opportunities. Trials could be run better in have more info for patients. But influencing treatments studied is huge for communities waiting for a cure! There are so many chronic illnesses that wait. #patientchat
Us TOO International @UsTOOHQ
We believe in empowering #prostatecancer patients and caregivers with support and educational resources to make informed decisions on testing, treatment, and management of side effects. @UsTOOHQ #patientchat
lillian lake @llake
@BarbyIngle A2b Also, someone who has been a #caregiver to someone who now has the same disease will have some background going into the dx. #patientchat
Becky Brandt RN @bbhomebody
T3 Treatments/Meds must jump thru so many hoops. Patients play the waiting game. Patients deserve the right to try when options are few. Even if trials aren't fully complete yet. Which is better: Death by disease or Death by side effect. One in the same! #patientchat https://t.co/H2kI6Uj0zc
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il
Your GPS Doc, LLC @yourgpsdoc
RT @abrewi3010: T3 patients want a better quality of life. Scientists want knowledge & development. CEOs want profits. Time means 3 diff th…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the pat…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medicati…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results…
Kimberly Amelia @fireflyrn84
T4: Influencing which treatments are being studied. If a clinical trial is in progress, the treatment decision has already been made. Being able to participate in deciding which treatments are studied allows us to leverage our diseases to an extent. #patientchat
Salem Oaks @SalemOaks
@abrewi3010 Excellent point. The stakeholders are not aligned! #patientchat
lillian lake @llake
RT @patientchat: #patientchat https://t.co/lHVo8zuau0
International Pain Foundation® @powerofpain
RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medicati…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivate…
Kimberly Amelia @fireflyrn84
RT @coffeemommy: THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so…
Alan Brewington @abrewi3010
RT @stage4kelly: @power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. S…
Kimberly Amelia @fireflyrn84
@sittingpretty61 Great idea! #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to co…
Jamie Roger @JamieRoger8
But if they all form a relationship to progress forward, they all might just succeed in achieving their goals #lifegoals #patientengagement #relationshipadvice #patientchat @salemoaks https://t.co/DCeY4Iq0oG
lillian lake @llake
RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patien
Salem Oaks @SalemOaks
Yup. One feeds the other. If the right treatments are studied, then less time will be needed. If the process can be sped up, then more treatments can be studied. The right balance is the holy grail. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/E13QQkFTd3
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/bCP55yeP94 #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medicati…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results…
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivate…
Your GPS Doc, LLC @yourgpsdoc
@bbhomebody Drug companies are very afraid of the legal implications. Even if patients sign disclaimers, how will the family react if they die from the side effects of a medication not fully studied? #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to co…
Vera Rulon FAHIMA @vrulon
@patientchat T4: Fascinating question. I say both. Sorry. If we focus on which treatments we won't streamline the process to get needed treatments to people, if we focus on improving the process treatments would get out there but are they the right ones? #patientchat
Richard Zhao @richardzhao
I know an entrepreneur that developed a tool for all clinical trail research. Too bad that they are targeting pharm companies, rather than focusing on patients participation. #patientchat
Dr. Kelly Shanahan @stage4kelly
@patientchat First we need to fix how trials are. Trials need to become more inclusive & easier for patients to access, thus decreasing time to accrual and increasing accrual rates. This is the foundation upon which we need to build. #patientchat
lillian lake @llake
@abrewi3010 A1 A large factor, for sure! & speaking too fast without active listening with compassion. #patientchat
Heather McCullen @H_SalemOaks
I feel like its missed that every person who becomes a patient as an adult probably had a job that had nothing to do with being a patient. They have a huge variety of untapped skill. For more common diseases you could find a person with any job you can imagine. #patientchat https://t.co/KXkd2VTkOq
Alan Brewington @abrewi3010
T4 how about paying patients for their time & expertise just like you pay scientists/admin. That would have a huge influence in everything #patientchat
Patient Chat @patientchat
T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat
lillian lake @llake
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Dr. Dorrie Cooper @sittingpretty61
A4. I think as in crime investigation follow the money and follow the patients who make great subjects. As someone who conducted research the design and subjects of your study really set up the efficacy. #Patientchat
PatientOrator @PatientOrator
T4: Social media presents a big opportunity for influencing which #treatments are being studies as it is used as a tool by many #patients to voice their experience with illnesses or diseases that are not so commonly represented in the media or elsewhere. #patientchat https://t.co/xvG0L3Z4XJ
Barby Ingle 📣 @BarbyIngle
Totally. #patientchat https://t.co/oN8lHEY1SY
lillian lake @llake
RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to…
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interventions improve the outcomes in which patients are interested? #patientchat
lillian lake @llake
RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medicati…
Patient Empowerment @power4patients
RT @patientchat: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to co…
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1RO…
Angela Cohen @angelee828
@patientchat T2: Every patient can potentially react differently which can help in the development of medicine. That’s why things are closely monitored during research/trials. But IMO in development you should already know your body. Personally, I didn’t at dx. some may tho. #patientchat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.c…
Mary MACK @MaryOCMack
T4. Both have equal opportunities I would say. Patients have ideas about what could be studied, as well as answers to what's wrong with the research culture. #patientchat
Beth Morton @beth_morton
T4: The latter. For the benefit of all #migraine patients, I'd want to be able to inform the R&D discussion before they are studied. We know better than our doctors even what is missing from our treatment. #patientchat
lillian lake @llake
Perfect. #patientchat https://t.co/uGfwXWTsM9
Kimberly Amelia @fireflyrn84
@H_SalemOaks exactly! #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @stage4kelly: @patientchat First we need to fix how trials are. Trials need to become more inclusive & easier for patients to access, th…
Dr. Kelly Shanahan @stage4kelly
@power4patients @abrewi3010 *literacy. Darn voice to text 😂 #patientchat
kathy kastner @KathyKastner
RT @nancy_kusmaul: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interve…
Zayna Khayat, PhD @ZaynaKhayat
RT @abrewi3010: T4 how about paying patients for their time & expertise just like you pay scientists/admin. That would have a huge influenc…
Jamie Roger @JamieRoger8
caregivers and parents of Dx patients can be HUGE libraries of knowledge as far as the patient experience and Tx being used. They may remember parts of the Tx plan that the patient may not. #relationshipadvice #patientchat @salemoaks #patientengagement https://t.co/VASBLBWPNT
Stacey Tinianov @coffeemommy
Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient perspective. People benefit in hearing all sides of the story. A 360 perspective --> context. Context --> Understanding. Understanding --> Empathy. #patientchat
Salem Oaks @SalemOaks
Shameless plug opportunity. :) @SalemOaks is committed to working with patients so they can be more effective influencers of R&D. #patientchat https://t.co/NIAr2RXb0Y
Jack Aiello @JackMAiello
T4: Just tuned in (early in Hawaii). Obviously both are important. CT’s need to be designed to represent more real-world eligibility criteria and of course, the treatment are important if they show a significant survival and/or QOL benefit. #myeloma #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @PatientOrator: T2: Patients should play the key role in medicine development. First, cost affects who has access to the medicine once i…
lillian lake @llake
Soooo true. #patientchat https://t.co/XfzNLAPj7g
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patien
Richard Zhao @richardzhao
Thanks for the mention! SalemOaks: @richardzhao Welcome to the party! #patientchat #drugdevelopment #pharma #patienteducation
Heather McCullen @H_SalemOaks
RT @beth_morton: T4: The latter. For the benefit of all #migraine patients, I'd want to be able to inform the R&D discussion before they ar…
Richard Zhao @richardzhao
Thanks for the mention! JamieRoger8: @richardzhao So glad to have you for the discussion! @salemoaks #patientchat
Richard Zhao @richardzhao
Thanks for the mention! fireflyrn84: @richardzhao Hi Richard! How is the project coming along? Hope all is well in the Twin Cities. #patientchat
Richard Zhao @richardzhao
Thanks for the mention! fireflyrn84: @richardzhao Sounds good! Hope things are going well and settling down. #patientchat
Richard Zhao @richardzhao
Thanks for the mention! bbhomebody: @richardzhao Hi Richard🖑 I hope you're well. We miss working with you! #patientsentiment #patientchat
Alan Brewington @abrewi3010
RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient per…
lillian lake @llake
@JamieRoger8 @SalemOaks Absolutely! This happens all of the time. Advocates (caregivers) are valuable tools. #patientchat
Inspire @teaminspire
RT @UsTOOHQ: We believe in empowering #prostatecancer patients and caregivers with support and educational resources to make informed decis…
Quin Turner @QuinlanTurner
@patientchat T4: I'd have to say treatments assuming the decision to pursue was driven by pts (and not $). At least this way the pts NEED for a treatment, voiced by pts, pushed things to the point of a trial and we're not brought into something that we may not see the value in #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @bbhomebody: T2 Some healthcare workers feel that patients don't know the inside operations, therefore they aren't helpful. This is so o…
lillian lake @llake
RT @BarbyIngle: Totally. #patientchat https://t.co/oN8lHEY1SY
Inspire @teaminspire
RT @KenRayTaylor: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivate…
BayRidgeVet @BayRidgeVet
RT @gratefull080504: T1: The biggest barrier is paternalism + ego Giving up control is scary for a lot of organizations #patientchat https…
Patient Chat @patientchat
RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient per…
Vera Rulon FAHIMA @vrulon
@stage4kelly @patientchat Couldn't agree more. Thank you. There are many barriers/stumbling blocks. #patientchat https://t.co/rDme8vCr18
Barby Ingle 📣 @BarbyIngle
T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to share that with developers and know what would be the wish, and how do you see getting there? #patientchat https://t.co/cDqKy7T5yF
Ken Taylor @KenRayTaylor
T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something makes them feel better or worse. #patientchat https://t.co/rQkLpNSpuu
Kimberly Amelia @fireflyrn84
T5: Have a registry that patients can look at and know wha trials are recruiting. There are registries already, but if they could be disease based and easier to navigate. #patientchat
Dr. Dorrie Cooper @sittingpretty61
@jamienholloway Hop over to #Patientchat your feedback would be great!
Natalie 🦓 @_Nataliea
By funding it! Patient orgs are often the drivers in research esp for conditions without pharma involvement. #patientchat https://t.co/gblUTrZ10t
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something m…
Vera Rulon FAHIMA @vrulon
RT @nancy_kusmaul: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interve…
Dr. Kelly Shanahan @stage4kelly
@abrewi3010 Since we aren't even included in the conversation a large proportion of the time, I don't want to lose the opportunity to influence the process because of money. Also by taking money we can lose objectivity. #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something m…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to sha…
Jamie Roger @JamieRoger8
RT @patientchat: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something m…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to sha…
Alan Brewington @abrewi3010
RT @_Nataliea: By funding it! Patient orgs are often the drivers in research esp for conditions without pharma involvement. #patientchat ht…
Becky Brandt RN @bbhomebody
T4 Both! I think improving how trials are run will ultimately allow for more treatments to be studied. Speeding things up all around will offer tx's to more patients. #patientchat https://t.co/hHKv4nK8u1
Kimberly Amelia @fireflyrn84
YES! YES! YES! #patientchat https://t.co/irLNKoIzZi
lillian lake @llake
@abrewi3010 A3 Indeed. Which is where listening skills & setting aside ego comes in handy. And then there are the stockholders... #patientchat
Stacey Tinianov @coffeemommy
Use our outside voices effectively. Knock on doors. Multiple times if they don't open quickly. Generously listen to others & share our experiences and our goals (i.e. more cohesive, collaborative environment to accelerate research & improve care focused on #QoL) #patientchat T5 https://t.co/lECdChPc8k
Heather McCullen @H_SalemOaks
Check out @antidote_me (no affiliation) #patientchat https://t.co/oWSGsLmYA3
Geeky Fox @TechKitsune
T5: Present the info! Keep us informed, we might not know the process or outcomes. I'm more likely to look in to a treatment with more facts surrounding it. I might advocate for someone else to try it if I know what possibilities there are. #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to sha…
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@QuinlanTurner @patientchat T4: We also need to pursue treatments that are realistic, financially and in terms of patient burden. Even if we develop the "perfect" treatment, it will be not be helpful if it doesn't address these things. #patientchat
Mary MACK @MaryOCMack
T5 The business of medicine in the US coupled with the need for patients to participate in clinical trials is troubling. It is true that if a drug comes to market, many patients will be priced out. #patientchat
Dr. Alfonso Vidal @DrAlfonsoVidal
RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to sha…
lillian lake @llake
RT @patientchat: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat
Salem Oaks @SalemOaks
A5: Get educated about drug development so you can stand toe-to-toe with some very smart and powerful people. (They are just people) #patientchat #drugdevelopment #pharma #patienteducation
Patient Chat @patientchat
Topic 6 (T6:) coming up...https://t.co/bCP55yeP94 #patientchat
Dr. Alfonso Vidal @DrAlfonsoVidal
RT @KenRayTaylor: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something m…
Vera Rulon FAHIMA @vrulon
@patientchat T5: first things first - change culture in pharma R&D. I once recommended a cystic fibrosis caregiver to help design a trial for a Tx for the condition. I was told they will have to wait until the protocol was completed. SMH. #patientchat
Becky Brandt RN @bbhomebody
Yes! 👇👇👇👏👏👏👏 #patientchat https://t.co/0OK4ZQuCjd
Jamie Roger @JamieRoger8
I think that if they were educated on HOW to participate more then the stress/ inability to participate will decrease. This will allow them to have a better dialogue with their Tx team or pharma. @salemoaks #patientchat #patientengagement #educateeveryone https://t.co/O4mgD1Xsaq
Becky Brandt RN @bbhomebody
RT @abrewi3010: T4 how about paying patients for their time & expertise just like you pay scientists/admin. That would have a huge influenc…
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@patientchat T5: By discussing priorities. What is important to you and why? What are your treatment goals? What is a quality outcome for you? #patientchat
Salem Oaks @SalemOaks
A5: Ask for things that are feasible. You may need to learn what they are, but if you ask for things that researchers can do they will. AND they will maybe push the envelope a little further on your next one. #patientchat #drugdevelopment #pharma #patienteducation
Lisa Davis Budzinski @lisadbudzinski
T4 Runaway prices of such products raise a raft of challenges to ensuring that those in need of treatment have adequate access: https://t.co/KZOOvCVbUn #patientchat
Kimberly Amelia @fireflyrn84
@H_SalemOaks @antidote_me I’m actually partnered with them for my blog :) #patientchat
Patient Chat @patientchat
T6: What would you want to know more about in order to be more influential with research and development folks? #patientchat
Dr. Dorrie Cooper @sittingpretty61
A5. Reach out to key researchers, funding organizations and professional affiliations and give input, design ideas, and advocacy for R and D in particular treatment investigations. #Patientchat
Beth Morton @beth_morton
@fireflyrn84 Yes! This would be so helpful! https://t.co/DWWFqJ3s4W is not the most navigable website. #patientchat
Your GPS Doc, LLC @yourgpsdoc
A5: Opportunities for patients and caregivers to provide input from the beginning would be much appreciated. Perhaps front-line clinicians having easy access to clinical trials and sharing info with patients. #patientchat https://t.co/wdNpWuTjyk
Patient Empowerment @power4patients
RT @patientchat: T6: What would you want to know more about in order to be more influential with research and development folks? #patientch
lillian lake @llake
@KenRayTaylor The downside is when the medicine works & then it's taken away because of the approval process. At best, it is discouraging. At worst, it can mean complications & death. #patientchat
Dan Engel @DanEngelPTT
@BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert on the process. #Patientchat
Alan Brewington @abrewi3010
@stage4kelly I don’t think patients would lose objectivity. We still hurt, we can now afford to eat better bc we have some $. I do agree about losing influence, tight rope to walk. #patientchat
Salem Oaks @SalemOaks
You win the understatement award for today! #patientchat https://t.co/mNksip6zjC
Barby Ingle 📣 @BarbyIngle
RT @DanEngelPTT: @BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert…
PatientOrator @PatientOrator
T5: #Patients can contribute more actively to research and development by; sharing that they are interested in participating in research and development with those in the field. Inquiring about activities from doctors, colleges and internet etc. #patientchat https://t.co/M0RnBavtYO
Vera Rulon FAHIMA @vrulon
RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the pat…
Jamie Roger @JamieRoger8
YES! Opening that discussion can lead to so many more that can positively effect your treatment in the long run. @salemoaks #patientchat #talkfreely #priorities https://t.co/kYD6fXlwz3
Salem Oaks @SalemOaks
@abrewi3010 @stage4kelly From a company point of view, there are many compliance issues to manage. Trying to use the same process used for healthcare providers doesn't work for patients. #patientchat #drugdevelopment #pharma # patienteducation #sunshineact
Vera Rulon FAHIMA @vrulon
@llake @BarbyIngle Interesting point! #patientchat
Kimberly Amelia @fireflyrn84
@beth_morton There's another one too, researchmatch or something like that. Ugh, darn brain! #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @PatientOrator: T5: #Patients can contribute more actively to research and development by; sharing that they are interested in participa…
Barby Ingle 📣 @BarbyIngle
T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and access to them to share my influence (my story). #patientchat https://t.co/7aeYh0xVM5
Quin Turner @QuinlanTurner
@patientchat T5: It starts with mutual understanding that all are in a partnership to drive the best results and we all bring something different to the table. Establish standard protocols where ANYONE who may have an interest must be represented in all decision making #patientchat
Ken Taylor @KenRayTaylor
T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential help the treatment will provide. #patientchat https://t.co/0M8ZQw64Tc
Alan Brewington @abrewi3010
T5 #caregivers are definitely underutilized despite their knowledge base being worth more than gold! We need to get them involved more #patientchat
Heather McCullen @H_SalemOaks
@TechKitsune What barriers do you see to learning the process? What would you most want to know? #patientchat
lillian lake @llake
RT @nancy_kusmaul: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interve…
Becky Brandt RN @bbhomebody
T5 We can assist by getting involved in any way we can. Tweetchats, webinars, in person, at events-local, state and national. By Offering our #patientperspective we add an important piece of the puzzle. #patientchat https://t.co/oYcmrSPWVp
Jamie Roger @JamieRoger8
That gap needs to be bridged for many reasons. @salemoaks #patientchat #patientengagement #crossthatbridgeNOW https://t.co/2p0j3KY8SH
Kimberly Amelia @fireflyrn84
T6: Advisory panels, does industry want us involved on a consistent basis #patientchat
Nigel H @Crohnoid
#patientchat Sorry I'm late. Rule 1 - don' tOK the system software update when you need your computer in the next hour or so
Geeky Fox @TechKitsune
T6: Processes, how did they come to their conclusions, how is it being explained? Is it being taught to me or just spoken? I want to understand because I think it's interesting and not a part of my normal world. #patientchat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential h…
Patient Empowerment @power4patients
RT @bbhomebody: T5 We can assist by getting involved in any way we can. Tweetchats, webinars, in person, at events-local, state and nationa…
Dennis Keim @denniskeim
RT @stage4kelly: @patientchat First we need to fix how trials are. Trials need to become more inclusive & easier for patients to access, th…
Dennis Keim @denniskeim
RT @patientchat: T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which tr…
Nigel H @Crohnoid
T5: In UK we have a PPI role - Pateint and Public Involvement. Research projects are encouraged to have a PPI on the team when applying for funding #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat T6: Is there interest in learning who within the R&D world is best to reach out to? Often these large companies aren't transparent on who's who and it is difficult to navigate the organization. #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How can researchers address the barriers to participation? #patientchat
PatientOrator @PatientOrator
T5: Care partners can contribute more actively to research and development by engaging those that they care for with educational materials around research and development. Providing their input to researchers and developers on behalf of the patient etc. #patientchat https://t.co/M0RnBavtYO
Ken Taylor @KenRayTaylor
RT @llake: @KenRayTaylor The downside is when the medicine works & then it's taken away because of the approval process. At best, it is dis…
Dr. Dorrie Cooper @sittingpretty61
A6. Contact information for the correct organizations, hospitals, and doctors in charge of the research and teaching hospitals list of current treatment and research focus. #Patientchat
lillian lake @llake
RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues.…
Kimberly Amelia @fireflyrn84
@Clara_Health also has great resources for clinical trials and research #patientchat
Alan Brewington @abrewi3010
T6 how does the research affect my quality of life. #patientchat
Salem Oaks @SalemOaks
@sittingpretty61 Simple stuff - that nobody has taken care of. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Beth Morton @beth_morton
T6: As a relative newbie #advocate, I've yet to find ways to make meaningful contact with researchers and drug companies, etc., so that I can have some influence. I'd love to know how to do that! #patientchat
Angela Cohen @angelee828
@patientchat T5: I ask about research at almost every appt I go to. Some of the doctors I know are fantastic abt taking a few minutes to discuss research even if it’s just in the process. You won’t know until you ask. #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@vrulon @patientchat T6: What kind of influence are you interested in having? Drug development is often done by the large companies but much of the application thereof is done in the academic world. How do we build bridges? #patientchat
Jamie Roger @JamieRoger8
@Crohnoid Rookie mistake. and one i am ALWAYS guilty of, I never learn. #patientchat
Ken Taylor @KenRayTaylor
It would be the side effects of the med, because it will empower you to become a good influencer #patientchat https://t.co/rRmuLKO4d2
Heather McCullen @H_SalemOaks
@TechKitsune I ask because this is main focus of @SalemOaks, we aspire to teach patients and patient advocates about the entire process of medicines development. #patientchat
Jack Aiello @JackMAiello
T5: There are a surprising number of opportunities: Local IRB’s and Scientifid Review Committees at cancer centers, National Clinical Trials Network grous (eg @SWOG), NCI itself, contact Pharma and offer to share your story #myeloma #patientchat
Matthew Katz, MD @subatomicdoc
RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient per…
Vera Rulon FAHIMA @vrulon
@TechKitsune Agree. Transparency on how R&D works is key to also work on pharma reputation. It's a shame IP gets in the way & it takes so long for results to be published! #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and…
Lisa Davis Budzinski @lisadbudzinski
Watch FDA site for opportunities to speak on different conditions https://t.co/5YpuPuim8K #patientchat
Nigel H @Crohnoid
T5; I wrote a post on how I became involved with research by taking a PPI role - https://t.co/qbhsVdXZYj - #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and…
lillian lake @llake
@SalemOaks @abrewi3010 @stage4kelly Or perhaps the compliance process needs to change to better benefit all stakeholders. #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: It would be the side effects of the med, because it will empower you to become a good influencer #patientchat https://t.c…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential h…
PatientOrator @PatientOrator
T5: advocates can contribute more actively to research and development by raising awareness of any particular disease or illness and or ways to improve patient wellbeing/wellness #patientchat https://t.co/M0RnBaN5no
Jamie Roger @JamieRoger8
RT @nancy_kusmaul: @abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How c…
Heidi Grabenstatter @PatientIntv
@PatientOrator Yes, the young eager undergrad or high school student emails the professor expressing an interest in the research. The same trick will works for patients of any age. The more enthusiastic, the better. The funding status of the lab is public. #patientchat
Mary MACK @MaryOCMack
T6. Whether patient ideas are truly welcome. And if the ideas are welcome and are good and implemented, whether that person/patient will be credited and monetarily rewarded. #patientchat
Dr. Kelly Shanahan @stage4kelly
T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry for patients who want to be involved? I know the metastasis research society has one, but what about others? #patientchat https://t.co/dHKd804Cyz
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential h…
Lisa Davis Budzinski @lisadbudzinski
RT @Crohnoid: T5: In UK we have a PPI role - Pateint and Public Involvement. Research projects are encouraged to have a PPI on the team whe…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and…
iPain Living Magazine @iPainFoundation
RT @DanEngelPTT: @BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert…
Alan Brewington @abrewi3010
Any ideas? #patientchat #wtfix #hcsm #medx https://t.co/Hw9acYBIXi
Kimberly Amelia @fireflyrn84
CT: We need to get more patient involvement at the base level with organizations that are pursuing new treatments. If we’re the ones utilizing it, then we need to be involved. Great chat as always! Nap time now, worn out. Phase 2 of my migraine surgery one Monday! #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @fireflyrn84: @Clara_Health also has great resources for clinical trials and research #patientchat
Your GPS Doc, LLC @yourgpsdoc
Agree 100%! #patientchat https://t.co/CgMZ7GaRvp
Vera Rulon FAHIMA @vrulon
@nancy_kusmaul @patientchat That's a great question. Linking corp to academia to real world solutions is key. #patientchat
Nigel H @Crohnoid
T6: I want to help ensure that research being proposed is worthwhile and of benefit to the end user ie. us patients #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@abrewi3010 T6: Quality of life for those with your diagnosis too. So much research is focused on "cure" or numbers, while my perception is that people want to learn how they can live better with the diagnosis. Am I correct? #patientchat
Becky Brandt RN @bbhomebody
T6 I'd like to see an ongoing master-list of drug & treatment trials. When we know exactly what is being studied we can help direct it to the right patient population, speeding up the process. #patientchat https://t.co/qtE6l4Gk4b
Quin Turner @QuinlanTurner
@patientchat T6: What does it take to be taken seriously? We talk a lot about how we want things changed but it needs to be known that it doesn't come from a place of aggression. We want to help. When is it a bad thing when so many people want to drive positive change? #patientchat
Salem Oaks @SalemOaks
New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for patients, caregivers, and advocates to make requests. https://t.co/QEDBhhlIfd
Kimberly Amelia @fireflyrn84
@beth_morton Go to pharma websites and explore or google “patient involvement with pharma.” You should get a lot of info that way! #patientchat
Marie Ennis-O'Connor @JBBC
@power4patients Right on! #patientchat https://t.co/j7Mpf827fw
lillian lake @llake
@abrewi3010 @stage4kelly They may lose objectivity, but I contend pharmaceuticals lose objectivity because of money influence. Physicians as well. So I hold that it's not a valid argument for not compensating participants. #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @stage4kelly: T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry f…
Angela Cohen @angelee828
RT @fireflyrn84: @Clara_Health also has great resources for clinical trials and research #patientchat
PatientOrator @PatientOrator
T6: I think #patients would want to know more about who's conducting the research or development and for what purpose. #patientchat https://t.co/PDpNhvEUZG
Heather McCullen @H_SalemOaks
RT @QuinlanTurner: @patientchat T6: What does it take to be taken seriously? We talk a lot about how we want things changed but it needs to…
Kimberly Amelia @fireflyrn84
@SalemOaks Thank you #patientchat
Salem Oaks @SalemOaks
I agree. There is a solution here if we work on it together. #patientchat https://t.co/qn26yhkkjt
Becky Brandt RN @bbhomebody
@stage4kelly Great point! An easy to access master list would be so helpful. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @richardzhao: I know an entrepreneur that developed a tool for all clinical trail research. Too bad that they are targeting pharm compan…
lillian lake @llake
RT @patientchat: T6: What would you want to know more about in order to be more influential with research and development folks? #patientch
Your GPS Doc, LLC @yourgpsdoc
CT: #patients and #caregivers should be involved in research and development at the beginning stages. Eliminating barriers and forging partnerships is the first step. #patientchat https://t.co/q8ffjCWHCR
Vera Rulon FAHIMA @vrulon
RT @QuinlanTurner: @patientchat T6: What does it take to be taken seriously? We talk a lot about how we want things changed but it needs to…
Dr. Dorrie Cooper @sittingpretty61
While my disability is arthritis there are a number of related conditions I am interested in helping by volunteering to be a subject. In the Phila area we have some of the best teaching hosp in the country. #Patientchat
Alan Brewington @abrewi3010
@nancy_kusmaul Agree 💯 % #patientchat
Patient Chat @patientchat
Thanks to all for joining today's Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
Marie Ennis-O'Connor @JBBC
RT @bbhomebody: T6 I'd like to see an ongoing master-list of drug & treatment trials. When we know exactly what is being studied we can h…
Dr. Kelly Shanahan @stage4kelly
@nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective treatments that will allow me to live longer with a better quality of life. I'd be perfectly happy if it were a chronic condition and not a death sentence #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Lisa Davis Budzinski @lisadbudzinski
RT @Crohnoid: T5; I wrote a post on how I became involved with research by taking a PPI role - https://t.co/qbhsVdXZYj - #patientchat
Salem Oaks @SalemOaks
CT: Earliest involvement: Patient/Disease organizations should work on performing natural history studies and creating validated measures of disease progress and improvement. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/FmfO56fIBI
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@bbhomebody T6: I think this exists in some places, for some diseases. For example the Alzheimer's association has Trial Match https://t.co/o9GSpm039f #patientchat
PatientOrator @PatientOrator
@PatientIntv Agreed! Patients actively engaging/inquiring is key #patientchat
Patient Chat @patientchat
Thanks so much @SalemOaks for sharing your insights and being our guest for today’s #patientchat
Savvy Co-op | #askpatients @savvy_coop
@bbhomebody @stage4kelly This is what we are working on! And @bbhomebody, as a co-op member, you’re a part of this! #patientchat
Patient Chat @patientchat
Don’t forget to to check out the work Salem Oaks is doing here: https://t.co/l3lVDXQdFp #patientchat
Alan Brewington @abrewi3010
RT @stage4kelly: @nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective…
Heather McCullen @H_SalemOaks
Thanks everyone for participating. We had a great time. Any of you who have been in a tweetchat with me before knows I’ll be catching up and replying for the next few hours. 😂#patientchat
Blessed Tabvirwa @blestab
RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patien
Your GPS Doc, LLC @yourgpsdoc
RT @nancy_kusmaul: @bbhomebody T6: I think this exists in some places, for some diseases. For example the Alzheimer's association has Tria…
Alan Brewington @abrewi3010
@stage4kelly @nancy_kusmaul Well put on so many levels! #patientchat
Marie Ennis-O'Connor @JBBC
Just catching the end of a very interesting discussion - lots of great ideas from participants here! #patientchat #whywedoresearch https://t.co/GptfQyAj2K
Jack Aiello @JackMAiello
@bbhomebody Something beyond clinical https://t.co/8UFyEVoi01? #patientchat
lillian lake @llake
@patientchatIanother excellent #patientchat Thank you to all for inspiration and food for thought.
Nigel H @Crohnoid
T6: I've found a research project that fits well with my day-to-day skills and now being given opportunity to help lead a research study. SoMe so useful for spreading awareness @CostingCrohns #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, April 20th https://t.co/lRhU0PEGMz Hope to see you there!
Mighty Casey Quinlan @MightyCasey
<sigh> that time when you REALLY want to be all in on a t-chat, and your biggest client calls 5 minutes in 😱😱 sorry for the MIA, dudes! #patientchat
Alan Brewington @abrewi3010
Percocet is trying hard but the pain is playing to win. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @stage4kelly: @nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective…
Jamie Roger @JamieRoger8
#patientchat the wealth of knowledge that is in this group of humans is empowering. So glad to have shared this time with all of you, continuing being #patientadvocates #patientscientists and #powerfulspeakers SO #Thankful @salemoaks
Kimberly Amelia @fireflyrn84
@angelee828 Thank you! It’s another big one and a leap of faith. Phase 1 has been very effective! #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @JBBC: Just catching the end of a very interesting discussion - lots of great ideas from participants here! #patientchat #whywedoresearc
Dr. Dorrie Cooper @sittingpretty61
#PatientChat #clinicaltrials #ClinicalResearch https://t.co/VbAhObyBUC
Mighty Casey Quinlan @MightyCasey
RT @PatientOrator: T6: I think #patients would want to know more about who's conducting the research or development and for what purpose. #…
Becky Brandt RN @bbhomebody
@savvy_coop @stage4kelly Woohoo! And this is why we 💗 @savvy_coop . If you're not a member yet, please consider joining this groundbreaking coop where your voice is heard & amplified. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@patientchat @SalemOaks Thank you for introducing us to @SalemOaks#patientchat
Nigel H @Crohnoid
@abrewi3010 @blestab Medical polari, and some disciplines are far worse than others #patientchat
Jamie Roger @JamieRoger8
@Crohnoid That's what I always think... and then #FOMO haha #patientchat
Quin Turner @QuinlanTurner
@patientchat CT: Always refreshing to see how dif people interpret these questions. Really drives home how crucial different perspectives are when it comes to healthcare and brings to light so many avenues my brain skips over but are so freaking important. Pts killin it as always #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Savvy Co-op | #askpatients @savvy_coop
This 👏🏽is👏🏽why👏🏽we’re👏🏽here👏🏽! Yay! Join us and help us show the industry there is a passionate network of patients ready to get involved! Become a co-op member and help us shape this movement https://t.co/NwxqEMMeNz #patientchat https://t.co/0olqTVq53z
Savvy Co-op | #askpatients @savvy_coop
RT @SalemOaks: New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for p…
Patient Empowerment @power4patients
@nancy_kusmaul @abrewi3010 Having been a caregiver myself, I know how hard it is to handle the daily stress. Bottom line is we need to vigilantly support caregivers so they can contribute to research AND maintain their own health #patientchat
Dr. Kelly Shanahan @stage4kelly
@JackMAiello @bbhomebody https://t.co/VooHjQf0N9 is difficult for many patients to navigate. I would love to see a centralized clearinghouse , funded by industry/govt, where a patient can call in, speak to a real live person who helps them find appropriate trials. #patientchat
Jamie Roger @JamieRoger8
@beth_morton @SalemOaks @H_SalemOaks Can't wait! #patientchat #patientadvocate
Mighty Casey Quinlan @MightyCasey
RT @nancy_kusmaul: @abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How c…
Inside The Brain @InsideThe_Brain
RT @JBBC: Just catching the end of a very interesting discussion - lots of great ideas from participants here! #patientchat #whywedoresearc
Patient Chat @patientchat
RT @QuinlanTurner: @patientchat CT: Always refreshing to see how dif people interpret these questions. Really drives home how crucial diffe…
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
RT @power4patients: @nancy_kusmaul @abrewi3010 Having been a caregiver myself, I know how hard it is to handle the daily stress. Bottom lin…
Mighty Casey Quinlan @MightyCasey
RT @bbhomebody: @savvy_coop @stage4kelly Woohoo! And this is why we 💗 @savvy_coop . If you're not a member yet, please consider joining th…
Vera Rulon FAHIMA @vrulon
Thanks for a terrific #patientchat y'all!! This was enlightening. Keep me posted on the next one!!!
Mighty Casey Quinlan @MightyCasey
RT @sittingpretty61: #PatientChat #clinicaltrials #ClinicalResearch https://t.co/VbAhObyBUC
Heidi Grabenstatter @PatientIntv
@nancy_kusmaul @abrewi3010 @fireflyrn this circles back to our T1 convo. . . customized incentives to meet unmet needs of care partners and patients. Everyone is an individual. #patientchat
Nigel H @Crohnoid
Check out the #bmjdebate from last night. Discussion on a very similar topic and equally as lively #patientchat
Heather McCullen @H_SalemOaks
@MightyCasey I’ll read all your replies, promise! #patientchat
Amanda @LAlupusLady
. @BarbyIngle and i were talking about this... Thanks to Erin for sharing great link @GilmerHealthLaw #patientchat https://t.co/YCgOsiOvUV
Becky Brandt RN @bbhomebody
@JackMAiello Exactly. An all encompassing list, both government & private entities, with complete transparency. #patientchat
Savvy Co-op | #askpatients @savvy_coop
@SalemOaks Thanks for sharing https://t.co/6owHnEOcPa!!! We are growing, but we will be more effective the more patients we have so that industry knows patients are serious and ready to get involved. #patientchat
Joe Babaian @JoeBabaian
RT @SalemOaks: New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for p…
Jamie Roger @JamieRoger8
RT @QuinlanTurner: @patientchat CT: Always refreshing to see how dif people interpret these questions. Really drives home how crucial diffe…
Vera Rulon FAHIMA @vrulon
@stage4kelly @JackMAiello @bbhomebody I wonder if PhactMI should take that on? #patientchat https://t.co/BNZqBkMJGA
Becky Brandt RN @bbhomebody
@stage4kelly @JackMAiello That sounds amazing! I'm with you! What a great help for so many. #patientchat
Nigel H @Crohnoid
@H_SalemOaks @CostingCrohns @K_SalemOaks We're in the early stages but I wrote this post - https://t.co/qbhsVdXZYj - about how I ended up getting involved and what we are aiming to do #patientchat
Erin Gilmer @GilmerHealthLaw
RT @LAlupusLady: . @BarbyIngle and i were talking about this... Thanks to Erin for sharing great link @GilmerHealthLaw #patientchat https:…
Jamie Roger @JamieRoger8
@power4patients @nancy_kusmaul @abrewi3010 Such a crucial step in the Tx plan for the patient and the continued QOL for the caregiver. We can't care for others if we forget to care for ourselves. #amen #selfcare #patientchat @SalemOaks
Unite Pangaea @unitepangaea
#PatientEngagement should occur from lab to legislation. I hope we will look back in 20 years and wonder how we worked without the input of patient and community voices. #PatientChat. https://t.co/tdMdOVcqTR
Vera Rulon FAHIMA @vrulon
@LAlupusLady @BarbyIngle @GilmerHealthLaw I was reading that article this morning. #patientchat
Jack Aiello @JackMAiello
@stage4kelly @bbhomebody Yes, I agree that https://t.co/4XrNdLQ5li can be difficult although the new version is better. Many of the disease advocacy groups do have CT specialist who talk with pts and help find clinical trials. #patientchat
PatientOrator @PatientOrator
@stage4kelly Love this! Excellent approach to getting more #patients involved! #patientchat
Jamie Roger @JamieRoger8
Another time when technology takes away from the #humanrelationship and the ability to engage. #communication #patientchat @SalemOaks https://t.co/sBBhvdSnWJ
Jamie Roger @JamieRoger8
@vrulon Thank you for joining us @salemoaks #patientchat
Vera Rulon FAHIMA @vrulon
@stage4kelly @JackMAiello @bbhomebody While PhactMI is current geared to providers - I'm suggesting they consider being more patient facing given all the pharma co's involved #patientchat OK - now really signing off.
Autodidact @iamukasa
RT @abrewi3010: Any ideas? #patientchat #wtfix #hcsm #medx https://t.co/Hw9acYBIXi
Jamie Roger @JamieRoger8
@bbhomebody @JackMAiello #transparency is the key word there. #patientchat
Tatiana Prowell, MD @tmprowell
RT @stage4kelly: T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design.…
Jamie Roger @JamieRoger8
RT @Crohnoid: @H_SalemOaks @CostingCrohns @K_SalemOaks We're in the early stages but I wrote this post - https://t.co/qbhsVdXZYj - about ho…
Dr. Kelly Shanahan @stage4kelly
Glad I found this chat - great discussion!! #patientchat
Becky Brandt RN @bbhomebody
Wow! Time flies. Thanks everyone for this enlightening chat. Happy Friday to all of you. #patientchat https://t.co/vA1wRI0Hpt
Jamie Roger @JamieRoger8
@unitepangaea The relationships involved in RD are so easily overlooked but more important than people realize #relationshipadvice #useyourvoice #patientscientist #patientchat @SalemOaks
Heidi Grabenstatter @PatientIntv
@patientchat T6: Everyone can stand to be more openminded. I am a scientist and a chronic patient. Often it as simple as taking a step back, recognizing your audience, and having some empathy. We are all learning so we might work together toward a common goal. #patientchat
Becky Brandt RN @bbhomebody
@stage4kelly I'm glad you found it too. I love your insight. #patientchat
Becky Brandt RN @bbhomebody
@PatientIntv @patientchat You're so right Heidi! We should all take a deep breath & listen, instead of formulating our answer while someone else talks. #patientchat
Becky Brandt RN @bbhomebody
RT @PatientIntv: @patientchat T6: Everyone can stand to be more openminded. I am a scientist and a chronic patient. Often it as simple as…
#patientchat content from Twitter.